Thursday, November 29, 2012

The Reality of Lyme Disease

I'm sure some of you have noticed I have backed off a bit on my Lyme posts. Well I shouldn't say backed off, I am busier then ever. But I have changed my tune on things a bit. I wanted you to know why.

First, I'm not sure what I believe anymore. I used to believe that we all had this infection that we could treat with long term abx. I used to believe that LLMDS were the unsung heroes we needed to get better. Now, not so much. I still think LLMDS are heroes. I mean they believe in us, and listen to us and TRY to help us. I just don't think they have the answers yet. I'm somewhere in the middle of this IDSA VS Ilads thing.

You know how they say when you are in the middle of something you can't see the full picture. For example when you are in a bad relationship, you need to get your friend's viewpoint right? Because you know you are biased, you want a certain outcome. Well, doing what I do online, gives me an outside view of what's going on in the Lyme world. And I don't like what I see.

I see a lot of people spending lots of money on treatments that are not helping. And I'm not talking one treatment, I'm talking all of them. Whether it's antibiotics, picc lines, rife machines, zyto or ozone. I know a lot of people doing desperate things, and treatments that only desperate people would do. And spending lots of money doing them. The usual outcome: not much. Either you stay the same or get worse. So why do we keep doing these things?

1. Desperation. We want to get better.

2. Promises of different treatments curing Lyme. If I had a penny for how many times I heard someone say, "my drs success rate is 80%," I'd be rich. Where are these 80%? And please don't say to me, those people move on, they are not online. Because the fact is, I know the same people now, that I knew eight years ago online. And not too many are better. Some have even died.

3. The "herx" theory. Until we can really tell under a microscope, and drs are actually deploying it, I am not buying it. I know we herx, and I know there is such a thing. But honestly folks, let's face it, how many of these reactions or not true herxes and are just "flares," bad reactions to meds, or simply just over toxicity to meds.

Read this written by my friend  PJ Langhoff. I think she describes this subject well.

My wish for us all, is that there be more research. We need to figure out exactly what this is that we have, and we need accurate tests. How can we continue fighting different strains and species and infections if we don't even know for sure what we have? And we need research on the damage that "Lyme and friends" has done to us. Don't you all feel like you have circulation problems? I do. Is this damage or infection. We need to look more into it. I believe we have both, damage and infection.

So anyways, this is not to take away hope. This is not to make people feel stupid, this is not to say that noone has gotten better. This is just a little of my viewpoint on the reality I see in this "Lyme" situation.

The reason I want to get my opinion out there, is I want things to change. I want you all to get better. But if we are fighting for the wrong things, I don't think things will change. We need research. If we were dumping all our money we waste on treatments that are not helping, then maybe we would start to get somewhere and there would be hope for the future generations. Something to think about.

And again, I will repeat, I know some people get better. Just not enough.

How long have you been in Lyme treatment?
1-2 years
2-5 years
5-10 years
over 10 years
Create your own poll

Has Treatment Helped You?
Yes, I am cured.
Yes, a lot.
It brought me to a certain level and now I've plateaued
No, I have been on treatment but only got worse.
No, I am on treatment but stay the same.
I can't even afford treatment.
I got better with natural things instead of conventional ways.
Create your own poll


  1. Amen! Thank you for writing this Lisa! After 14 years fighting this illness I have come to the very same conclusions. And what the heck do I do about your silly tiny fly on the screen...haha you had me picking at my iPad convinced there was a tick tormenting me. Needed that laughter today ;)

    1. Hahaha that made me laugh..the part about the fly on your screen!!

  2. I have had LD for over 10 years now. I was diagnosed in 2005 but only treated for LD with 21 days of antibiotics and told that I was fine even though I still had symptoms. In 2010 I started getting real sick and was told that I had allergies and was going through menopause. A Western Blot conducted in 2008 confirmed that I was not done with LD but it was no CDC positive (only 4 bands instead of 5), however, my doctor never followed up and refused to test me again. She wanted to put me on hormone replacement therapy, which I refused since I was only 45 at the time. I went to see a holistic doctor for bio-identical hormones. This doctor said that it sounds like something else and not hormones because I had too many symptoms for my age. She mentioned Candida and sent me for blood tests, including LD. I started eating gluten free and a week later my body crashed. I went back to the doctors early and was told that the testing came back and showed that I had LD, Bart, Bab and Erlichia. The doctor put me on Doxy which I took for a little over 3 months. We tried other antibiotics too, but I could not handle any of them. I went out of work on disability for 5 months, returned part time for another four months and have been back to work full time since Dec 2011. Three months into treatment I started on Buhner's herbal protocol, Ondamed therapy, and lifestyle changes with diet and quitting smoking, removing toxins from my house and personal products. Then after I was able to return to return to work PT I started on Beyond Balance - Better Health herbal protocol and have been on that ever since. I continued with Ondamed therapy too for the first year. I started ACT this summer and that has been a major contributor to my health too. I would have to say that I am 90% improved and look forward to continuing on that path. I can appreciate this article and feel that there are some who might not get better entirely. I also believe that I will require life time "maintenance" to some extent for my health. I do not believe that I will constantly worry about getting worse because I do everything in my power to get better. I continue with lifestyle changes in diet, exercise, and removing toxins from my life. This is a major part of it. I also continue taking herbs and listening to my body and what the needs of my body are. I continue with energy work too. It is my belief that doctors who do not incorporate a total body wellness approach using more than pharmaceutical antibiotics are doing a disservice to their patients because a full spectrum of support is necessary to heal the body, mind and spirit...

    1. Thank you Meo, thank you for sharing your story and beautifully written. YOu are great at talking about the reality of the situation but yet still leaving hope for those who suffer. I hope you continue to improve, makes me happy when I hear of anyone who has. <3 THanks for stopping by!